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One of my favourite books is The Cider House Rules by John Irving, where one character is a middle-aged man who is confused and forgetful. It turned out he had early Alzheimer’s disease.
When I read this, in the 1980s, I hadn’t yet heard of the term or the medical condition, and nor had the man’s family in the novel. For years, they suspected him of secretly drinking.
Today, it would be barely credible that people hadn’t heard of Alzheimer’s – the most common cause of dementia – as it seems to be constantly in the media, thanks to widespread awareness-raising campaigns. Half of people now say dementia is the health condition they fear the most, according to data from Alzheimer’s Research UK.
When my middle-aged friends forget something they sometimes comment – only half-jokingly – that it may be a sign of Alzheimer’s.
So, I was fascinated to see that a book is being published called Is it Alzheimer’s? 101 answers to your most pressing questions about memory loss and dementia.
While much of the book is advice for people with a family member who has dementia, the first chapter – “Should I worry about my memory?” – could have been written expressly for anyone who seems to be fretting about their forgetfulness.
The author is Dr Peter Rabins, formerly a psychiatrist at Johns Hopkins University School of Medicine in the US, who specialised in treating people with dementia.
When I interviewed him, one of the things Dr Rabins stressed is how common it is to have occasional memory lapses as we get older.
On formal memory tests, the difference may not be as much as you think. In one kind of test, for instance, people are given a list of 10 unrelated words, and then several minutes later, are asked how many they can recall. The average 25-year-old can remember six or seven of them. The average 75-year-old can remember five.
But in everyday life, older people tend to be concerned about different features of their memory. For example, not being able to remember where you put down an item, and for it to take a few moments to think of the name of someone you know, or even a particular word.
“What normal ageing involves is misplacing glasses, or your keys, or having difficulty coming up with familiar words or the names of people,” said Dr Rabins. “There’s no doubt that there are people who are worrying unnecessarily.”
As a general rule, the key difference between dementia and ordinary forgetfulness is that for dementia, someone has both a decline in memory or thinking abilities and a reduction of their ability to do everyday tasks, like household or workplace chores.
“We usually require that the problem affects somebody’s daily functioning,” said Dr Rabins. “So if someone always paid the bills, was able to cook and clean the house, was able to plan trips – if those kinds of things start to be much more difficult, that’s when they should be evaluated by a professional.”
Brain scans can help in diagnosis (Photo: Tek Image/Science Photo Library/Getty)Memory loss that is not yet dementia
In practise, that loss of function is not going to be instant; memory and abilities will deteriorate slowly over time.
In Alzheimer’s, this is caused by the death of brain cells and loss of their connections to each other, perhaps triggered by the build-up of a toxic protein called amyloid.
If someone’s memory is somewhat worse but it hasn’t yet affected their ability to do tasks, this is known as mild cognitive impairment or MCI. About one in 10 people with MCI deteriorate in to having dementia by the following year.
This progression is not inevitable, though, and a quarter of people with MCI revert to “normal” memory levels in the next year. This may be because in their initial test, their performance had was artificially low because of temporary problems, like having a cold or a bad night’s sleep.
Someone would be classed as having MCI if their performance on memory or other cognitive tests had reduced by 30 to 45 per cent.
Of course, that’s impossible for a person to gauge by themselves – it would have to be measured on tests. But there are some signs that help distinguish between whether someone has ordinary forgetfulness and MCI or early dementia, said Dr Rabins.
“With the word finding problems, if you wait a minute or two and don’t push yourself, often the correct word or name comes to your mind. That would be [something] you do not need to worry about.
“It’s often helpful to ask somebody that the person knows well – a partner or a good friend – if they’ve noticed any forgetfulness or other problems in thinking, beyond just coming up with words or names every so often.”
In fact, it is common for someone with dementia to be less aware of their memory problems than their spouse.
In the UK, there is no simple blood test for Alzheimer’s that can give a definitive diagnosis, although these are in development.
Anyone concerned would usually first be given some brief memory tests by their GP, before being referred to a hospital for longer and more complex tests. They may also have brain scans, which can reveal the loss of nerve cells and brain shrinkage that are the ultimate cause of the symptoms.
One condition that can be confused with dementia – but has a better prognosis – is functional cognitive disorder or FCD.
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In FCD there is no death of brain cells. It seems to be caused by people placing too much effort on trying to remember things, rather than letting it happen naturally, similar to the way that anyone’s memory can occasionally “go blank” under pressure.
FCD may begin if someone wrongly thinks that the ordinary memory lapses that happen with ageing are a sign they have dementia, which starts a vicious circle of effortful remembering and worsening memory performance.
“Some people notice things that are subtle, and then in their mind it becomes a major problem,” said Dr Rabins. “Part of the reason for seeing a doctor, if somebody’s worried, is to find out that they don’t have a problem. That’s often as important as finding out that you do.”
Benefits of raised awareness
The raised awareness of dementia that has happened over the past decade or two has benefits, of course. It must have been awful for the families of those affected when few people had heard of their condition and there was so little understanding or support.
It used to be common for people to die from dementia without ever having had a diagnosis, and even today, it can take several years before a diagnosis is received. But Dr Rabins also offers a note of caution about the widespread calls for people to get diagnosed as early as possible.
Early diagnosis has its advantages, like letting people get their financial affairs in order and set up lasting powers of attorney. On the other hand, there are as yet no good treatments for dementia that can slow its progression to any meaningful degree, so it can upset patients for little purpose, he said.
“I’ve seen people upset by an early diagnosis become consumed by it and lose the ability to enjoy things as much as they would have, because they’re constantly worried about it,” he said. “It’s a complex issue.”
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I’ve been reading
I’ve just had that wonderful joy of discovering a great book by an experienced writer who is new to me, but has an extensive backlist that I can now lose myself in. The writer is Clare Chambers, and the novel that has brought her to notice is Small Pleasures.
The plot couldn’t have been better designed to lure me in. It’s about a female journalist who stumbles across the scoop of her career, and it has a science angle: a woman is claiming to have had a virgin birth. I won’t give away any more of the plot, but will say that I couldn’t put it down. I’ve now just started another of her novels, Shy Creatures, and it’s just as absorbing.
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